I will begin my blog series with a summary of events that transpired in late 2012-2013, six years after my destructive, unnecessary sinus surgery. After this blog, I will jump to 2017, ten years after the surgery, where aggressive blacklisting is resumed, after my long-term protective GP goes into private practice. For several years, following the surgery in 2007, and before I found the protective GP, I suffered relentless, brutal patient blacklisting. It started up again in 2017, after I lost my GP. In the years between, I continued to suffer patient blacklisting in dental and specialties. https://ens3.wordpress.com/2010/08/04/patient-blacklisting/

In late 2010, a new dentist found abscesses in the tooth roots of the two upper right molars below the Caldwell-Luc surgery site, on that side. I had been suffering daily, unbearable facial pain for a year, and had seen several dentists who had failed to find these abscesses, (and who had treated me abusively and dismissively). I had been to the hospital school ER for the facial pain, and had been stonewalled. I had been banned from the hospital school dental clinic, and was never given a reason. https://ens3.wordpress.com/2010/08/04/patient-blacklisting/ My blacklisting was spread throughout my state, and I was banned from the two other dental school clinics as well. I saw multiple ENT facial plastic surgeons throughout my state, none of whom agreed to do surgery, most of whom refused to examine me, and gave me a referral to the hospital school pain clinic, in my city. https://ens3.wordpress.com/2010/06/20/pain/ I refused to resort to pain medication and addiction.

I know the reason I was banned from the dental school clinic. The reason was that the hospital school ENT, Dr. F, who saw me, following this butchery, had buried the medical malpractice of the fringe ENT, who had committed this crime, creating false medical records in which I had not been harmed, I was not sick, I had a history of terrible sinus problems which persisted, and I was mentally ill and predatory. I know he called at least two of my providers and told them this, before they met me, because they confessed to this. Because of these provably false medical records, the hospital system was chained to the commitment that my ongoing medical issues would NOT be diagnosed, and would not be documented (or treated). The outcome for me could have been deadly, as the pain in my face was intolerable. Though I have survived, the outcome of the blacklisting has been immeasurably destructive. The infection was not only in the teeth, but in the bone on the right side of my face, which continued to collapse. My mouth is now slightly twisted to one side. I suffer other conditions that might have benefited from treatment.

The following is a blog post I wrote in June 2010, and never posted. (I just posted it.): https://ens3.wordpress.com/2017/11/04/a-good-doctor/ ‎You see the words “good doctor” in there. This is a doctor many of you have seen because he left the hospital system, and became a pioneer in the treatment of Empty Nose Syndrome. Before that happened, he tried and failed to find a single infectious disease specialist in my city who would agree to see me. It appears the “good doctor” eventually had enough of the hospital system. I don’t see how any doctor who was simultaneously a decent human being could have seen what was being done to me, and carry on.

I had been blacklisted to all infectious disease specialists in my city, following this event with an infectious disease specialist, in the hospital system: https://ens3.wordpress.com/2010/06/06/liars-and-thieves/ I had gone to see Dr. D in order to get help with my infections and pain. This is not the same Dr. D I will be discussing further on.

After the new dentist–who I managed to see without this becoming visible to the hospital school blacklisting machine–root-canalled my second abscessed tooth, in late 2010, I began to live again. My facial pain decreased to a quieter level. My breathing had improved. I was not well, but after four years of a living death, I began to date, and I returned to my former part-time job in 2012.

Within a year, the right side of my face began to ache badly again. I knew I had a sinus infection, and that it was most likely in my facial bones as well. I went to see Dr. D, an ENT outside the hospital system.

Dr. D was a part owner in the outpatient surgery center where I had been butchered by Dr. S. He was a young doctor. He was visibly horrified by the sight inside my nose, by the views on my CT scans, and by my recounting of my blacklisting hell. Operating outside the hospital system, and outside the city limits, he operated no bullshit agenda. He knew many of the players in my story. At my first appointment, I’d just had a culture of a painful infection in my right sinus which had come back negative. The culture had been done by an ENT at a sinus center outside the hospital system. I showed it to Dr. D. His brow furrowed. The lab result was from the hospital system lab. He knew what lab the sinus center used and it was not the hospital system lab. He also knew that the ENT I had seen at the sinus center was a close friend with Dr. F. He had formerly worked with Dr. F, in the ENT Dept., at the hospital system. Dr. D cultured my sinus infection. It was MRSA.

I saw Dr. D whenever I had a sinus infection. In late 2012, I was suffering, again, with a sinus infection and pain on the right side of my face. I saw Dr. D, repeatedly, for months, for this infection. But everything had changed. In perhaps four appointments, spanning months, Dr. D never cultured my infection. He just kept prescribing antibiotics, knowing full well my history of serious antibiotic-resistant infections. At the fourth or fifth appointment, I had begun to lose patience. Dr. D wanted to prescribe s STRONGER antibiotic–clindamycin–and he STILL refused to culture the infection. I wrote a blog about these events in March 2013: https://ens3.wordpress.com/2013/03/09/sick-care/

Desperate to believe in Dr. D, I took the clindamycin. I got sick with C. Difficile. At that point, he FINALLY cultured my infection. It was AR and resistant to clindamycin. I believe I picked up the antibitiotcs prescribed by Dr. D, but I don’t believe I took them. Because of his malpractice, I was now fighting TWO AR infections. I lived on kefir for months, and continued to guzzle it for years. I still do. After I was betrayed by Dr. D, I resolved to never see another ENT or take another antibiotic for a sinus infection. I took Oil of Oregano capsules daily for the infection. Eventually the pain in my face subsided. I suffered with diarrhea for four years. It has only stopped in recent months. I was retested for C. Difficile last January and I do not have it. I do have serious gastrointestinal problems. There is no doubt in my mind that Dr. F had reached out to Dr. D, and convinced him to refrain from culturing my sinus infections. There dared not be a documented medical history of sinus infections following my sinus butchery in 2007. (My GP had documented, for Dr. F, that I had never had a sinus complaint or been seen for a sinus infection in the six years before the surgery, so he could not have me showing up with sinus infections, in my medical records, following the surgery, as, according to his medical notes, I had not been harmed by the surgery.) This would make a liar of Dr. F. Instead, I must be portrayed as mentally unstable, a fabulist, and a predator. I must be portrayed as so frightening that most doctors would refuse to even see me.

I stayed away from ENT’s. I kept my head down. My goal was to put this horror behind me, and live what was left of my life. At the end of 2016, my GP went into private practice. She no longer accepted my insurance. I was scheduled with a nurse practitioner, for my primary care, in the hospital school system.

BAM! The aggressive medical sabotage and blacklisting struck right up.

I am being more direct in my blog writing than I was in 2009-2014. I tried to become invisible to the criminal(s) who have stalked me through the medical system, for 10 years, due to my sin of having been senselessly butchered, and then character-assassinated, in my medical records. My tip-toeing has done me no good. I am 65 years old. If I am not going to be allowed to live, no matter what I do, then I’ll be damned if I am going to be quiet.

In the next blog, I will begin to document the medical sabotage and blacklisting that commenced in 2017.

Scorpion, my book about my unnecessary turbinate reduction surgery resulting in Empty Nose Syndrome and my subsequent patient blacklisting, is now available in all formats from Smashwords, Inc. and in Kindle format from Amazon.com. Because I want everyone to read my book, I have reduced the price to $2.99.

I called Dr. Shark’s office and told Wendy that I wanted to pick up my patient records when I came for my appointment on December 5.

I got the records as soon as I arrived. Before my name was called, I had time to see the term “atrophic rhinitis” on three records—November 7, November 12, and November 26—all of my post-operative exam dates, except for the first one. November 26 was the day that Dr. Shark had accused me of having an emotional problem because, as he’d said, there was nothing wrong with my nose. My fear for my condition overshadowed my feelings of betrayal

Dr. Shark was trying out a new tactic this day. “Tell me how you’re doing,” he said, magnanimously, as if his only concern was my well-being. I skipped over the question and pointed out the term “atrophic rhinitis” on my records.

“Is it true?” I asked.

“Only temporarily,” he said. I knew that atrophic rhinitis was not a temporary condition. It was incurable, but I clung to his words with ragged hope. He asked again how I was doing. I barely heard the question. My universe had been reduced to atrophic rhinitis—“dead moose.” I told him I was better, but that I still could not breathe well or sleep. He checked my nose. He said that the crusts were all gone on the left, three-quarters gone on the right, and that I did not have atrophic rhinitis today.

When I got home, I called Wendy and told her that I had forgotten to ask the doctor if I needed to take any precautions when my two-year-old grandson came to visit on Dec. 22. He had MRSA. Actually, so did Leah. She had gotten it from her son, but the baby’s infection was worse. Wendy said that she would get back to me. Jack had reserved a motel room for Leah and the kids. My apartment couldn’t accommodate them. They were coming for Christmas, as was Laura and her family. For the first time in seven years, Jack and I and the kids were going to have Christmas dinner together.

That evening, I looked through my patient records. The CT report of November 18 stated, “No significant septal deviation is seen.” One of the premises upon which I had based my decision to have the surgery was that I had read that a deviated septum can contribute to the development of polyps because air doesn’t flow normally through the nasal passages. I didn’t have a deviated septum.

The surgical pathology report noted a clinical history of deviated nasal septum and chronic sinusitis. I did not have a deviated septum and when did I get chronic sinusitis? I had never been treated for a sinus condition in my life before I met Dr. Shark. I had gone to him for tinnitus. On the medical history that I had filled out on August 6, following Respiratory—asthma, emphysema, lung–I had written “none.” After Allergic, Immunologic—environmental–I had written “Lyme’s Disease, Fibromyalgia since 1984, hay fever, CO exposure winter 2006-07.” None of these things qualifies as chronic sinusitis. People with chronic sinusitis have miserable noses, they can’t breathe, they use nasal sprays. I had never had a breathing problem or a dry nose, or used a nasal spray, until after Dr. Shark’s surgery.

On the progress notes, dated August 6, Dr. Shark had noted “chronic sinusitis.” I wondered when he had written that. There had been no discussion of sinusitis in August. If we had discussed “chronic sinusitis” on August 6, I would surely have mentioned it on the patient form that I had filled out on the same day. A piece of that form seemed to be missing from my records. Where was the paper that asked why I had come to see the doctor, and asked for a description of my symptoms? I had filled out a lot of these forms lately, and that was always one of the questions. He allegedly noted “infection” on August 6, yet failed to mention it in his August 8 letter to my GP.

On a pre-surgery report, dated October 28, Dr. Shark had written, “She complains of recurrent sinusitis, throat congestion, and extensive sinus disease per her recent CT.” I had told him that I had noticed stuffiness a few times when I cried. This stuffiness had been so insignificant that I had not mentioned it until the day he’d told me that I needed surgery.

I had never discussed a sinus problem with any doctor in my life. I had gone to the same doctor’s office for five years. Nowhere in those records was there a single complaint about a sinus problem–nor in any previous medical record. I had just been approved for Social Security in March. I had filled out copious medical forms. Nowhere was there a mention of a sinus problem, detailing and evidencing my medical history since 1984. How did he think he could get by with this?

My patient exam report of November 12 noted not only atrophic rhinitis, but “chronic rhino sinusitis.” This was the second time the doctor noted atrophic rhinitis, and now, he bestowed a chronic rhinitis condition on me, which I assumed was something worse than sinusitis. He was ramping up the diagnosis. Was he inventing chronic conditions to explain why I had atrophic rhinitis two weeks after his surgery?

According to the surgical pathology report, this was removed from my nose and sinuses: multiple pieces of flat bone and cartilage, in aggregate measuring 4.0 x 4.0 x 0.2 cm. Also some gray mucoid soft tissue measuring 2.0 x 2.0 x 0.6 cm. I ran to my bedroom and got a ruler. 4.0 cm was larger than 1 ½ inch. Suddenly, I was wearing a little cage and I was falling down a dark hole in my cage. This was why I had atrophic rhinitis. Turbinate “tissue” was bone. This was why the poster on the ENS forum had told me that turbinates did not grow back.

The surgical report was full of words like “power dissector” and “mocrodebrider” and “blade” and “trocar obturator” and “Killian knife.” I couldn’t look straight at it. I peered at it, through fingers covering my eyes. Near the end of the report, I saw these words, “This left a markedly deformed septum.” Was this why he’d told me that I had a deviated septum, reinforcing the verdict at every exam? Had it been a necessary part of the diagnosis because he didn’t have the skills to operate without destroying the septum?

Now I knew why Dr. Shark had told me that he would start me on Premarin soon. Premarin is a treatment for atrophic rhinitis.

I thought back to Dr. Shark, on November 26, complaining that other people had worse noses than mine and were not suffering that much, asking me if I had an emotional problem. I thought of him knowing full well that he had brought terrible suffering upon me for the rest of my life with an unnecessary surgery and trying to shame me into silence. I started to cry, but it made my nose feel so horrible that I had to stop. My nose was ineffectual. It couldn’t even produce snot.

When I went to an Ear, Nose & Throat doctor for ringing in my ear, I ended up with radical sinus surgery and a nose job. I was made a nasal cripple, my face and my health were destroyed. I was shocked to discover that other doctors didn’t care. In fact, they covered it up. And I couldn’t even sue. It could happen to anyone. It could happen to you.

I wrote this blog post in June 2010 and never published it. I am posting it now because I reference it in a new blog. This blog post will make sense within the context of the new blog.

Yes, there is such a thing. I had a feeling this was going to be one of them. His reputation is the best in town. I hadn’t seen him before because the wait to see him is long. Two and a half years ago, when I was begging to be seen by an otolaryngologist at the medical center, this doctor was recommended. I can’t help thinking how everything might have been different if I could have waited to see him. But I couldn’t wait. I was smothering, crying, pacing, pounding the walls. So I took the “first available” with Dr. F. Dr. F contrived to cover up the damage that had been done to me by an un-board-certified ENT—the unnecessary bone amputation from my face, the tunnels drilled through my head, the ripped-out mucosa, the acinetobacter infection. When I kept getting sick and having infections, the lies had to be covered up with increasing vehemence and cruelty until I was buried in them and could not get help for any of the conditions that flourished after the “surgeries.”

Since Christmas, I have been increasingly ill with ongoing infection, fevers, sweats, chills, nausea, and pain in my face that has reached levels during which I have been crazed and incoherent with pain. My face has caved in on both sides, but more on the right. The first doctor I saw for the pan and facial collapse told me I needed to see a different doctor. The second doctor told me I was describing a sinus infection. He ordered three weeks of Bactrim and referred me to three other specialists. I refused to take the Bactrim until I got a bone scan. There ensued a cat-and-mouse game in which the doctors I saw tried to keep me from getting a bone scan and I tried to outsmart them. I hate games, but what are you gonna do when you’re playing for your life? I can’t afford to be a snob. I am hardly in a position to say, “Oh, this is so childish. I’m not going to play.”

In the end, I got the bone scan, but not until I had taken the three weeks of Bactrim. The results are hazy, as they would be following a course of strong antibiotics. The Bactrim knocked the pain way back, but just as I suspected it would, it started to build back up a few weeks after I finished the drug. My teeth started crashing together. This is what would happen if the infection were osteomyelitis as Bactrim is not strong enough to kill off a bone infection. You need intravenous Vancomycin for that. So I have been desperately trying to get doctors to help me, but as I fought for the bone scan, reams of false documentation were created, calls were made, doors were slammed in my face. I am not a person to these doctors. I am “damage control.” Lies have been documented about my conditions and they must, at all costs, be substantiated. This is “medicine” in America.

But not entirely. I saw a doctor today. I told him what has been happening to me. “I’m sorry,” he said. “That’s doctors. “ No surprise. No doubt. No attempt to sweep it under the rug.

“Come this way,” he said. “I want you to meet someone.” He took me into the room of his assistant and he told her exactly what I had told him. She looked at me with alarm and sympathy. “Set aside an hour next Monday,” he said. “We will call around and find someone to see her for this.” “This” is probable osteomyelitis. He wanted me to meet someone alright—a good doctor and a decent human being.

I am amazed. I am heartened. Even if it is too late to help me, now, I will not feel as hopeless about the human condition. I will not be as angry and broken-hearted. I have met a good doctor. In fact, I have met a few. It must take an enormous amount of moral courage to stand straight in a den of liars and thieves . I believe that one good doctor can spoil the whole bunch. I hope the little bit of goodness I’ve seen just festers and takes over the whole profession.

I have not written a blog in a long time. I am intending to write series of new blogs, covering a series of new medical abuses perpetrated upon me by the medical establishment in the city in which I live. Most, or all, of these abuses (a few are undetermined) have been perpetrated by the hospital system originally responsible for my medical blacklisting, following the butchery of my nose and face, in 2007, which resulted in ENS and other serious medical conditions.

The abuses, which I will be describing, have catapulted my health back into an abyss, causing new medical issues, many of which accompanied the original condition of ENS. These newly created issues include dental destruction, chronic pain, peptic ulcers resulting from over-use of ibuprofin in the attempt to manage pain, worsened insomnia, due to intense chronic pain, and PTSD resulting, in part, from seven months of abominable patient black-listing, false patient notes maligning my character and causing provider after provider to disregard my serious medical issues, including a perineural cyst, in my sacrum. While the tumor in my spine/pelvis may not have been caused by this series of events, it was allowed to worsen through six medical appointments between July and October, in spite of a meticulously prepared list of symptoms, definitive, in retrospect, of a perineural cyst.

My list was ignored and none of the symptoms documented, as I was diagnosed by a series of four family practitioners, and a sleep physician, with “psychological problems,” “hyperthyroidism,” “psychological bloat,” and “somatic disorders, multiple.” I had to specifically request an endoscopy, as I suffered unbearable abdominal pain. The ulcers diagnosis was not recorded in my chart by the physician who had been contributing to my “psychological” diagnosis, so I went on to be abused by three additional family practitioners, as I was ignored, passed on, and eventually saw a physician outside the system (who was contacted by the hospital system, and who also ignored and abused me).

I am the diagnostic technician who demanded an abdominal MRI, after the pain became so hideous that I knew the “ulcers” diagnosis did not cover it. I was patronized and given an abdominal CT (which I was told was an MRI). On September 19, this CT scan revealed the perineural cyst in my sacrum. I requested an appointment with a neurosurgeon, which I soon learned, could not be made because the neurosurgeon required an MRI, before he would see me.

The most current family practitioner needed for me to come in, again, and discuss my symptoms because an MRI, she explained, was expensive. After I went through the roof, I realized she could not order the MRI because she had never documented my symptoms in two appointment in two weeks. Instead, she had documented “somatic disorders, multiple.”

Being ENS sufferers, you know, there comes a time when no more bullshit will go in, not with a plunger, not with increased verbal abuse, not with threats, and not even with fear of death. You would rather accept anything than more lies and complicity in the assassination of your character, more greasing of the wheels of medical corruption. I called the GP on her scheme of needing to finally document my symptoms, which she did not deny, and I refused to come back in, for the sake her career.

In October, I saw a family practitioner outside the medical hospital system who was more overtly hostile than any of the preceding three GP’s from the hospital system. She refused to order the MRI. Even when I managed to make an appt. with a neurosurgeon and his office faxed a request for the MRI, she refused to order it. Her office manager barked at me, on the phone, to try steroids and physical therapy first (for a tumor) as an MRI was expensive. She told me she had “heard the story” from the hospital system. The “doctor” snapped at me that she was the doctor and I WOULD NOT tell her what to do. Mind you, a CT scan, in her hands, described the tumor in my back/pelvis. Not only that, she had test results showing that my kidney function had fallen into the “disease” category. I had been telling all these GP’s since January that I was having difficulty passing urine. Apparently, it had been backing up into my kidneys. In July, when I had begun to plead for help, my kidney function had still been normal.

I am going to write about this here because it is, undoubtedly, connected to the patient blacklisting, which was begun in 2007, in relation to the surgery which caused my ENS. Patient blacklisting is something I have written about, previously, here, and which many ENS patients have been forced to deal with, due to the corrupt nature of sinus surgeries, and the cover-up which follows serious damage. The cover-up, inevitably, involves patient blacklisting, even if the patient is innocent of awareness of wrongdoing or complaint. It is automatic. It’s a tool put in place to prevent accountability by the medical profession. The patient is collateral damage.

Also, some of my current health issues are related to the original sinus surgery, and are shared by other ENS patients. Among them, dental issues, insomnia and PTSD.

There is a strong case that the intentional damage perpetrated upon my teeth last April and May was the opening volley of a resurrected, targeted, aggressive, vicious campaign of patient blacklisting, an effort to cause unbearable physical suffering which was intended to be documented as “psychological problems.” I skirted that effort by avoiding almost all interface with medical personnel for four months. I smelled the rat. My long-term GP, who had protected me from the patient blacklisting for eight years, had gone into private practice and did not take my insurance. Once I was exposed, in the system, the abuse commenced immediately.

I could not avoid seeing a sleep physician, as I had been on Lunesta and clonazepam for sleep since the sinus surgery, in 2007 (Lunesta before due to long-term primary insomnia). I first saw the sleep physician in March and she began the blacklisting, writing grotesque, untrue, insane-sounding notes about me, of which I have copies, and some of which I will share. I believe she must have received a call from the physician who originated my patient blacklisting, who is still in the hospital system. Two doctors had previously confessed to receiving character assassinating calls from him, years ago, one confessing to this, on tape, in a meeting. The sleep physician verbally abused me for three hours, on and off, in her office, accusing me of doing a terrible, underhanded thing, coming to her for sleep medications. (I had been ordered by my new GP to see a sleep physician in order to get these medications. That is in the GP’s notes.) In the end, she prescribed Lunesta and put me on a five-week wean of clonazepam, which I successfully completed. This did nothing to mediate the ongoing abuse in her patient notes. In retrospect, I believe the aggressive clonazepam wean (which she only agreed to after I called my former GP and made an appt.), was designed to land me in a psych ward. She had insisted, for several hours, as she worked me over, that she would not prescribe it at all, and that I was a horrible person for requesting it.

So I dodged the clonazepam manipulation by being a tough customer. And I dodged the dental pain manipulation by being, again, a tough customer. (Remember, I’ve survived ENS.) And my toughness didn’t make any difference to the blacklisting machine. Weak and pathetic as it was, they portrayed me as mentally ill for reporting symptoms that turned out to be due to peptic ulcers and a perineural cyst.

There are many details to my story, not all of which I will share, but I would like to share in more detail, as this sketch does not explain the intricate connections of the parts.

As this story will be a connected series, I will come up with a name that will indicate that each blog is a part of the series. I hope I will find a few readers, but if not, it will do me good to write this story out. I am having many medical procedures and surgeries, so there will likely be gaps of time in between my writings.

One more thing, my ENS symptoms are returning, which makes sense as I am getting older, and I have been under alot of stress. Also, more of the damage from the surgery has come home to roost. I have glaucoma, due to optic nerve damage from the surgery, according to my eye doctor who is equipped with a conscience. The slick, greasy eye “doctor” from the hospital system who examined me, shortly after the surgery, called my optic nerve damage tests “inconclusive,” and told me I could expect to have eye pain and visual problems, at age 55, because “You can expect your eyesight to fail if you’re not eating fish three times a week.” I told my current eye doctor that, years ago. She looked like she’d seen a ghost. My expensively repaired teeth, including the dental implants I had to have after my teeth fell out, due to the surgery, are failing. I have observed that many of you have read my blog “My Sinuses Are Falling Into My Teeth.” That is what a Maxillofacial Surgery resident told me, years ago, right before she was sent to a new residency out-of-state, and I was banned from the hospital system dental school. The truth is my teeth are falling into my sinuses because the bone structure separating them was removed in the surgery. My expensively repaired teeth hurt as if there is wind blowing through their nerves, even though they have no nerves. The nerves that hurt are in the sinuses. A dentist told me today that nothing can be done.

I was senselessly butchered. The right side of my face is caved in. I have suffered indescribably, and worked beyond the imaginable to regain my life. And there sits a piece of human waste with a medical degree, in the university hospital system, who caused much of my suffering, over many years, and has reached out, again, after 10 years, to destroy my limited life. He didn’t do it alone. All he has ever had to do is say the word. And that is beyond horrifying. That is our medical system.

Thank you all for being a part of my journey. I haven’t been visiting the blog much or answering questions because, for a while, I moved on, and I didn’t remember the answers to many of your questions, but you have always been in my thoughts. God bless you.

“In Memory of Melisa, Our Daughter … “

In Memory of Melisa, Our Daughter, Died May 23, 2015 at the Age of 33 Years

“Melisa was a very sociable and friendly person. She had studied tourism to become a stewardess. She loved to travel and discover other cultures. When traveling, she complained of pain in her ears, which led her to consult our family doctor and an ENT specialist in Quebec who offered her a septoplasty because her nasal septum was deviated.

He never mentioned to Melisa that she would suffer an “intervention on her turbinates.’’ He just told her that he wanted to make more room in her nose so that air would flow more easily. If Melisa had been warned that her turbinates would be operated upon, she would have flatly refused to undergo this mutilation. This operation took place in 2007. When our daughter retrieved her operative report, it mentioned “full and dwindling septorhinoplasty of inferior turbinates, bilateral”.

A few months after the procedure, she was not very well, and developed several symptoms which were first: nasal dryness. To clear secretions, she had had to use constant force that became increasingly long and painful and provoked exhaustion and extreme fatigue. Allergies and asthma attacks followed. In the absence of inferior turbinates, the passage of air was too turbulent, the air was not filtered, warmed or humidified. She also had facial pain in the eyes, ears, throat and recurring headaches. She had pain in the lungs and they felt “frozen”. Melisa drank hot water and ate breadcrumbs to mitigate her chest pain and to have more sodium in the blood. Since 2008, she received allergy injections to offer desensitization.

Obviously, the result was predictable: job loss, poor quality of life, and return to our home. With time, her state and condition of life had gotten progressively worse, so she saw her ENT in September 2013. He found several symptoms that she developed. In October 2013, Melisa was on sick leave of work for empty nose syndrome and was hospitalized urgently in May 2014 for anaphylaxis (severe allergic reaction that can cause death).

In May 2015, our daughter met another ENT and his diagnosis was without a call, stating that Melisa had developed “a total paralysis of the sinus function as tissues and sinuses were dead and there was nothing more to do “. He advised her not to have surgery because her mucosa was severely atrophied. She preferred to know the truth rather than have false hope. She found this otolaryngologist human and listening: he had taken the time to explain things.

Her nose was so dry that it could not assume more normal respiratory functions to such a point that she had to live permanently plugged to an integrated flow humidifier unit received in 2014. Without this machine, our daughter was automatically suffocating as there was too much air coming in, and it was too cold, so her lungs and bronchi where inflamed, causing asthma attacks that could last for hours and hours. She could not live without this machine, or the chest pains were unbearable like if her lungs were in an “ice pack” … horrible! She had been diagnosed empty nose syndrome by this ENT.

Her friend, Carole, suffering from atrophic rhinitis due to a bilateral turbinectomy and cauterization of the inferior turbinates, with whom she communicated and who supported her, asked her what she loved most in life.

Here’s what Melisa replied in writing: “Let’s say that since I am disabled and cloistered at home, plugged to a machine, I try to enjoy the small moments of happiness with my family and I try to find soul peace to be able to leave quietly in a near future …. I do not have any quality of life, therefore I do not even know what I like; I do not know it because I cannot do anything! The disease weakened me to an extreme level! I try to take care to read, listen to music, read newspapers, be aware of news and take relaxing time thinking of nothing. It feels good. “

Shortly before her death, Melisa wrote “I made a prayer. I asked the Lord to give me a place beside him. I know you expect me and my place is already ready in your kingdom. To live in peace and without pain with you, my Lord. I leave you my soul to dance in a new life full of love forever because health is the greatest wealth in the world. Amen. “

We hope that this pathology, empty nose syndrome, will be recognized by the medical profession because we cannot conceive that such an operation could cause so much suffering and cause irreparable loss of our child.

We also insist that our daughter has died following a long illness on May 23, 2015, in our residence and did not commit suicide as other victims of empty nose syndrome have done.

When Brett Helling turned 36 on January 29, 2015, he was living in his parents’ basement in Worthington, Ohio, a well-heeled suburb of Columbus. His mom made him his favorite dinner: roast beef and mashed potatoes with Texas sheet cake for dessert. Brett’s friends sent him happy birthday messages on Facebook. Some asked where he’d been, why they hadn’t seen him in so long. Down the road at Natalie’s Coal-Fired Pizza and Live Music, where Brett had been working fewer and fewer bartending shifts, his co-workers texted him, begging him to come celebrate. But he didn’t want to be seen. He couldn’t do anything but lie on the couch, listless, trying to ignore the sensation of suffocation that had been plaguing him for nearly a year.

It started in middle school with allergies that only got worse over time. As an adult, Brett struggled with sinus infections that refused to go away. They clogged his ears, gave him headaches, and led to restless nights. It got so bad that in February 2014 he decided to have an ear, nose, and throat doctor perform a septoplasty, a routine sinus surgery to correct a deviated septum. His older brother had undergone the same surgery.

After lying low for about a week, Brett returned to his bartending gig. He told his doctor in follow-up appointments that something felt too “open.” The doctor assured him that barely anything was removed during the surgery, but over the next several months, Brett couldn’t shake the feeling that something was very wrong. His breathing was all messed up. In fact, he couldn’t even feel himself breathing through his nose. Instead of steady, rhythmic breathing, he felt like he was constantly coming up for air. And it was more than that. His senses felt dulled, like he’d had a lobotomy. Emotions he used to access easily now seemed far away, out of reach. Everything felt like nothing.

Brett and his girlfriend had recently moved into an old house, so at first, Carol Helling attributed her son’s symptoms to dust and other allergens. Plus, Brett could be a bit of a hypochondriac. He was always collecting vitamins and supplements to treat various ailments, and he was extremely sensitive to over-the-counter medications. He claimed he could tell the difference between Tylenol and generic acetaminophen.

Brett also tended to obsess over things, and Carol says obsessive-compulsive disorder runs in the family. As a toddler, he wouldn’t eat dinner until all the kitchen cupboard doors were closed. From high school through adulthood, he was notorious for his 45-minute-long showers; he had to wash in a certain order — neck, left shoulder, right shoulder — and if the routine got screwed up, he’d start over. He wore two or three T-shirts at a time, usually in hard-to-miss, lollipop colors.

Brett and his nephew Preston in 2011. Courtesy Helling Family

But for most of his life, Brett’s quirks were more endearing than concerning. In fact, other than his family and some close friends, no one would have suspected he battled anxiety and depression, which surfaced most often in winter. He drank frequently, and breakups could send him into an emotional tailspin. But no one was overly concerned about Brett before his surgery. He played guitar and bass, gigging often with several bands. He was a cheerleader for his friends, especially his bandmates and others in the Columbus indie-rock community. At work, regulars would come to Natalie’s just to see him.

It wasn’t until summer that Brett’s friends and family started taking his complaints seriously. He worked fewer hours, spent more time at his parents’ house, and stopped showing up to band rehearsals. While researching his symptoms online, Brett came across something called empty nose syndrome, a rare, controversial condition that can occur after surgical procedures on cylindrical structures inside the nose called turbinates. At first, he was relieved — empty nose sounded horrific. Good thing he’d had surgery on only his septum, not his turbinates. And yet the symptoms these patients talked about sounded so much like his own. The nasal dryness. The paradoxical open-yet-suffocating feeling. Panic. Insomnia. Fatigue. Anxiety. Depression.

In August, Brett dug out his surgical report. There, alongside the septoplasty, were the two words he feared most: “turbinate reduction.” He fell to his knees, hugged his dog, and cried. He hadn’t paid attention to the other, supposedly routine procedures his doctor had glossed over. They were presented to him as fine print, as nothing to worry about.

Brett was convinced his surgery had given him empty nose syndrome, but his doctor disregarded his concerns. Another ENT physician told him he was just having anxiety. It was a conservative surgery, nothing to worry about. “Breathe through your mouth,” the doctor told him.

That fall and winter, all Brett could think or talk about was his nose. He was constantly fussing with it — rubbing it, wiping it. Co-workers who used to crave his attention began pawning him off on whomever had the time and patience to handle his obsessive rants about turbinates. By mid-October, he had checked himself into the ER and told the nurse, “I need to sleep or I’m going to die.” None of the nurses or doctors had heard of empty nose syndrome. They diagnosed him with depression, but Brett told them it was an ENT emergency. According to Brett, the ER doctor replied, “The head of ENT here doesn’t think so and will not see you.”

A few days after Brett was discharged from the ER, he began calling around to ask for painkillers and tranquilizers. Concerned friends started calling Brett’s bandmate Sean Gardner and Gardner’s wife, Mollie, who had known Brett for years and dated him in her early twenties. Mollie called Brett’s girlfriend, who told her she knew he needed help, and that she’d tried over and over again to help, but Brett wouldn’t listen to her. The Gardners decided to go see him.

“Right when we got there, we were like, ‘Oh, shit,’” Mollie says. “The dog immediately jumped into my arms. Brett’s like, ‘Sorry, he’s just looking for some normalcy. I’ve been a little crazy.’”

“He kept asking for beer,” Sean says. “We were listening to records, and he was turning them up super loud while we’re trying to talk to him. He’s pacing and kept saying the same five-minute conversation about turbinates. Over and over.”

“He wasn’t showering, not eating, not sleeping,” Mollie says. “All he could do was this loop.”

Eventually, the Gardners convinced Brett to check himself into Harding Hospital, Ohio State’s psychiatric treatment center, where Mollie works as a nurse. “He kept joking that he was kind of excited because now he would have his One Flew Over the Cuckoo’s Neststory,” Sean says.

Brett stayed at Harding about a week, and when he got out, his friends and family were hopeful. They thought he might start sleeping, and maybe the prescribed antidepressants would do the trick. But he didn’t stick with them or the psychologist. He felt like no one was listening to him. His head wasn’t the problem — someone needed to fix his nose!

In December, Brett and his girlfriend broke up. He tried to tend bar, but working while feeling on the verge of drowning was torturous. To get through a shift, he’d sometimes run to the liquor store across the street to buy a pack of gum, which helped force him to mouth-breathe. And even though music was his greatest love, he stopped playing guitar. He moved back into his childhood home, where he spent his days and nights pacing the house with Kleenex stuffed up his nose. “I can’t live like this. This is miserable,” he told his parents. “I have no life now. I want my life back. I had a good life.”

Brett was embarrassed by what he’d become. He lost all his empathy. He even envied people with cancer. Everyone has heard of cancer. Doctors take it seriously. He envied strangers blowing their snotty, functioning noses. His sinus cavity, meanwhile, felt like a hollowed-out pumpkin. In frantic attempts to explain the sensation, he’d grab his mom’s fingers and stick them up his own nose. She tried to comfort him. “Sweetie,” Carol would say. “You know we haven’t seen all the doctors there are to see. We need to do some more research. Sometimes shit happens, and we’ll get through it. It’ll be OK.”

On Monday, February 16, 2015, four days shy of the one-year anniversary of his surgery, Brett drove his green Ford Focus down Interstate 71 in the snow toward Cincinnati. After crossing the Jeremiah Morrow Bridge — the tallest in Ohio — he parked near a closed rest stop, set his iPhone on the center console, rolled down his window, and got out of the car. Snow whipped around his face. It was severely cold, the windchill well below zero. His hands were white, his cheeks red. Low temperatures dried out his nose even more than usual, and the cold air hurt. Even though his mom had recently bought him a nice orange coat, he wore only a blue hoodie, black pants, and a winter hat.

The highway was under construction, and Brett walked north along a closed portion toward the bridge. A construction worker asked him where he was going, and Brett told him he was trying to get to the other side. The worker told him that he could drive him across and that he should come warm up in his truck. Brett shook his head and kept walking. Once he hit the bridge, Brett took off running, then stopped and looked over the edge. Climbing a parapet, he dangled his legs over the side, hung on briefly, then dropped 177 feet.

Turbinate reductions are routinely performed around the world, and usually with great success. But some patients say this surgical procedure ruined their lives. In Michael Jackson’s wrongful death suit, one of his doctors testified that Jackson’s insomnia could have been a result of empty nose syndrome. Online ENS forums and Facebook support groups are filled with people who say they’ve been discarded by doctors who told them nothing is wrong — that it’s psychogenic, all in their heads. In China, one man who said he had empty nose syndrome became so enraged that he stabbed an otolaryngologist to death. Others direct violence toward themselves. When regular ENS commenters go silent online, the community wonders if they’re gone for good.

Even as some ENT doctors doubt the syndrome’s existence, a handful of otolaryngologists have made it their mission to figure out why some people develop it, how to prevent it, and whether underlying mental conditions should be considered when diagnosing and treating this invisible illness. Meanwhile, ENS patients continue to plead for help and relief.

During his ear, nose, and throat residency at the Cleveland Clinic, Dr. Steven Houser shadowed his attending physician during nasal surgeries and sometimes handled initial consultations with patients during clinic visits. One day toward the end of his residency in the late ’90s, Houser examined the chart of a middle-aged woman who was complaining of nasal blockage, congestion, and difficulty breathing. The attending doctor had operated on her turbinates years earlier. She’d had plenty of time to heal, so Houser assumed the patient must have hit her nose or maybe developed a polyp. But when he examined her, he was surprised to see that her nose wasn’t blocked at all. (“You could drive a truck through there,” Houser says.) Her septum was straight. There were no holes or other oddities, but her turbinates — those tubular, bony structures inside the nose — were significantly reduced from the surgery. The woman told Houser that for some reason, she could breathe easier when she had a cold.

Houser was baffled. How could this woman have trouble breathing when her nose was wide open? And why would a cold make her feel less blocked? He described the situation to his attending physician, who then went into the room without Houser. After the appointment, the attending physician hemmed and hawed and never provided a good explanation. He told Houser not to worry about it.

But Houser did worry. What could explain such a bizarre condition? He did some research, and after talking to Dr. Murray Grossan, an ENT doctor in Los Angeles, he learned about empty nose syndrome, a controversial condition coined by the Mayo Clinic’s Dr. Eugene Kern in 1994. Kern described “nasal cripples” who, after turbinate surgery, suffered from symptoms like nasal dryness, crusting, and a sense of obstruction despite a wide-open nasal airway. With the help of colleagues, Kern conducted a study of 242 patients who’d been diagnosed with a rare type of nasal infection and theorized that many of these patients actually suffered from empty nose syndrome.

Not everyone in the ENT community was convinced by Kern. In a 2001 Los Angeles Timesarticle, one physician referred to the supposed illness as “empty head syndrome.” But Houser took to the internet and began talking with people about their ENS symptoms. In one forum, he started a “Questions for Dr. Houser” thread. Some in the forum sound merely curious (“Is it good for us to swim?”). Some wonder about stem cell treatment to replace missing tissue (“Your first goal, if you want stem cells or another treatment,” Houser responds, “should be to get ENS recognized as a problem.”). Others can’t sleep and are getting desperate (“I am devastated. … I can find things to do to make it through the day; can you help me make it through the night?”). Eventually there were so many questions — nearly 30 pages of threads — that Houser’s wife was getting mad at him for spending all night on the internet. He had to stop answering questions online, but he didn’t stop his investigation.

Once patients realized an ENT doc was not only interested in their condition but also wanted to help, they began traveling from Australia, Europe, China, and the Middle East to Houser’s clinic in Cleveland. For patients Houser diagnosed with ENS, he developed an AlloDerm implant to mimic the lost turbinate tissue. Insurance didn’t cover the $9,000 to $14,000 procedure, but it seemed to be working. One of Houser’s patients self-published a book about his ENS experience: Having Nasal Surgery? Don’t You Become an Empty Nose Victim! Houser wrote the foreword.

“I’ve had about a dozen patients tell me that I’ve saved their lives and kept them from committing suicide,” says Houser, who has operated on about 70 people. “That’s why I continue to do this, because, to be honest, these patients are very difficult.”

Since Kern’s report in 2001, very little had been written about empty nose until Houser published the findings of his experimental implants in 2007, and then another article — “The Diagnosis and Management of Empty Nose Syndrome” — in The Otolaryngologic Clinics of North America in 2009. In the same journal issue, Dr. Spencer Payne at the University of Virginia published a response paper titled “Empty Nose Syndrome: What Are We Really Talking About?”

“The problem with empty nose syndrome is probably not that it does not exist,” Payne writes, “it is that we cannot adequately explain its existence by what we currently understand about the nose. Many otolaryngologists are unwilling to make a ‘leap of faith’ and, instead of acknowledging the existence of something they do not understand, are left skeptical of it in its entirety.”

While the symptoms ENS patients complain of are unique, their plight is familiar. For years, people suffering from chronic fatigue syndrome were treated with skepticism from the medical community and often told their debilitating condition was psychogenic. “Maybe these people are just lazy” was the unspoken (or sometimes spoken) refrain. BuzzFeed previously reported on a 2010 CDC study that concluded chronic fatigue patients suffered disproportionately from “maladaptive personality features” like neuroticism, paranoia, and OCD. It wasn’t until 2015 that the National Academy of Sciences pronounced chronic fatigue syndrome to be a debilitating condition with concrete physical symptoms and not a psychological illness. In the same NAS study, most patients reported it taking more than a year to get a diagnosis; a third reported it took more than five years.

Fibromyalgia patients face similar skepticism. Physicians also once believed irritable bowel syndrome was a psychological condition. Leaky gut syndrome is accepted within some corners of alternative medicine, but many doctors are skeptical of its existence. Morgellons — a more recent controversial condition involving painful, itchy lesions with mysterious “fibers” — is often regarded as a delusion, a form of psychosis.

Regardless of the validity of these contentious conditions, the experience for people who believe they have them is similar. They go from doctor to doctor, craving a diagnosis, or at least a physician who will take their complaints seriously. In one study, chronic fatigue syndrome patients said that “lack of acknowledgment could be even worse than the symptoms.” Meanwhile, the actual symptoms — which are experientially real, even if the source is debated or unknown — persist. The longer the symptoms persist, the more likely they are to either exacerbate underlying psychological conditions (anxiety, depression, OCD) or create them.

To suffer is one thing. To suffer and be told by medical professionals that nothing is wrong? That’s enough to make some people want to end it all.

Inside your nose are two bony shelves divided by your septum, and these shelves contain three sets of turbinates. Each side of the nose contains a low, middle, and high turbinate. The low one, called an inferior turbinate, is the biggest — like a small cigar, about five or six centimeters long — and inside the inferior turbinate are blood vessels that can swell and shrink dramatically. (Imagine a penis and you’re not far off.) Turbinates help regulate airflow through the nose and also warm, filter, and humidify the air using a moist outer lining of tissue called mucosa.

Allergies, sinus infections, and other conditions can cause the inferior turbinate to stay enlarged, which leads to nasal blockage. If that’s the case, and if antibiotics don’t work, it’s not unusual for an otolaryngologist to recommend reducing the inferior turbinate (and, in rare cases, the middle turbinate). There are a number of ways to do that, and there’s no consensus on which method is best. Some doctors break the bone and move the structure out of the way. Some remove about one centimeter from the head of the turbinate. Some remove the bottom third of the entire tube. Others leave the outer tube alone and remove the inside, like taking the tobacco out of a cigar. Some doctors shrink the turbinate using cauterization or radio frequency. Sometimes doctors remove the entire turbinate — a total turbinectomy — though that method has fallen out of favor in the U.S. Often these procedures are done in combination with a septoplasty to fix a deviated septum.

Illustration by Bryan Christie

The CDC estimates that in 2006 (the most recent year of data), more than 900,000 people underwent nasal surgery. Though the CDC couldn’t provide data regarding turbinate surgeries specifically, the doctors I spoke to say a turbinate reduction is probably the most common procedure in rhinology, and they also say most of those patients walk away happy.

So imagine you’re an otolaryngologist operating on hundreds, maybe thousands, of patients. In follow-up appointments, almost all of them thank you for helping them to breathe normally for the first time in years. Only a handful are dissatisfied. One patient says he can’t breathe correctly. He feels like he’s suffocating. But everything looks great in his nose. The airway is completely open. The surgery did exactly what it was supposed to do.

And yet the patient keeps coming back, complaining more and more. He seems anxious, jittery, depressed. He’s not sleeping well. He’s having trouble performing everyday tasks. With each follow-up appointment, he becomes increasingly agitated. He says this routine surgery resulted in empty nose syndrome and ruined his life. You’ve heard of the condition, but you also know some doctors are skeptical of it. You certainly never spent time on the topic in medical school, where otolaryngology students concentrate on more common nasal problems, like sinusitis, deviated septum, and cancer. Not to mention the ears and throat.

Lots of other patients have appointments lined up, and they all take time. This outlier is taking time away from those patients. Eventually, you throw up your hands and discharge him from your practice.

There’s only one explanation: This patient is crazy.

Doctors like Houser in Cleveland, Payne at UVA, Jayakar Nayak at Stanford University, Subinoy Das at the U.S. Institute for Advanced Sinus Care and Research in Columbus, and researchers at Ohio State University are studying empty nose syndrome and trying to figure out why some patients get it and others don’t. Houser, Nayak, and Das treat ENS patients with implants and/or injections, and many of these patients have seen improvement. (Carol Helling says Brett received injections from Das but saw only temporary improvement; Das declined to comment for this story.)

Yet fundamental questions about ENS have yet to be answered. Are there environmental factors? Doctors in warm, humid climates like Singapore and Australia routinely perform total turbinectomies, and instances of ENS aren’t reported there as often, even though one study has shown that as many as 20% of patients who have their entire inferior turbinates removed could develop ENS.

And what accounts for the delayed diagnoses? Some patients begin experiencing symptoms months after the surgery; for others, symptoms don’t arise for years.

Dr. Jayakar Nayak Courtesy Jayakar Nayak

No one knows for sure why some turbinate reductions result in ENS and others don’t, but there are currently two prevailing theories. Houser’s theory argues that for ENS to occur, turbinate tissue must be removed or damaged, and then the sensory nerves in that area must regenerate poorly. Some methods of turbinate surgery can damage the nerve-rich mucosal layer more than others.

The other theory has to do with airflow — that the shape of a patient’s nose, and the way air flows through that nose, makes a patient more or less susceptible to ENS. Payne also thinks turbulence plays a role. “The more turbulent the airflow, the less you’re going to get a sense of good breathing,” he says. “It’s like if you stick your head out the window of a moving car, you can breathe in through your nose and feel the air moving through there, but I almost get anxious, because the air seems like it’s so poorly moving through the nose. I wouldn’t be surprised if in the empty nose patient, it’s not just a sense of decrease in receptors. It’s also an increase in the turbulence.”

The physics of airflow through the nose is complex and still not fully understood, though a study is underway at Ohio State University to better understand it. OSU’s Dr. Alex Farag and engineer/researcher Kai Zhao are developing 3D models to perform virtual nasal surgeries on patients before an actual surgery. By taking measurements and running models, they hope to see how the surgery could affect nasal airflow, which could lead to more-informed surgeries and fewer complications.

It could also be that both the airflow and mucosal/sensory theories are simultaneously true. For now, Houser and Stanford’s Nayak use cotton pledgets in the nose to help diagnose patients who complain of ENS symptoms. When the piece of cotton is inserted correctly, a patient with ENS will often feel radical improvement.

And then there’s the psychological mystery. Nayak says the ENS patients he has treated not only breathe better, they’re happier. “Anxiety, depression — all of these are off the charts for the initial patient with true empty nose syndrome,” Nayak says. He and his team are still trying to understand why that simple tubular structure seems to be essential to a proper sense of well-being for some people.

Houser can’t fully explain the relationship between mental health and ENS either. “I’ve wondered, which came first?” he says. “Were they that way, and therefore they’re more prone to nerves healing poorly after surgery and developing empty nose? Or is it the empty nose that made them so nervous and worried? I can say for sure that I’ve seen nervous, worried patients, and I implant them, and they do appear more at ease after they’re implanted. When I can get their breathing better, they’re less anxious.”

In a 2012 study in France, doctors treated a 37-year-old man with ENS symptoms who left his job and all social relationships. He spent most of his time alone in his bedroom with a humidifier. After doctors treated him with cognitive therapy and an antidepressant, many of his symptoms cleared up. “Treating ENS as a somatic symptom disorder might constitute a first-line safe alternative to surgical or even medical treatment,” the authors say.

“What we’ve seen in a lot of other chronic diseases is, each person’s perception of how bad they are is also dependent upon their general psychological health,” says UVA’s Payne. “People with poor coping mechanisms, with underlying depression or anxiety disorder — they are more likely to have symptoms that seem to take over their lives. That’s just not a normal response to chronic disease. And so you scratch your head, because as a physician, it’s the hardest thing trying to understand when are symptoms real, when are symptoms real but exacerbated by underlying psychological issues, and when are symptoms completely psychological.”

One ENS patient I spoke with, 52-year-old Sheila O’Shea, has become an informal counselor for suicidal ENS sufferers and sometimes fields late-night phone calls from them. She finds the emphasis on depression and mental health issues associated with ENS patronizing and insulting. “We’re sane people going through an insane situation,” she says. “Have you ever been stuck underwater, and you couldn’t make it to the surface fast enough? That panic you have? We have that all day long.”

She, like Brett, insists the accompanying mental condition is different from depression. “It’s as if you’re looking at the world through a big piece of Plexiglas. You can see everything and hear everything, but every experience is flat,” she says. “Depression messes with perception. Here, nothing is wrong with our perception. I’m not depressed.”

Brett Helling’s older brother, Paul, once gave him a mounted deer head he’d fished out of the trash. As a joke, Brett put the deer head in his car and drove around town with it for months. The first time Sean Gardner saw it, they were drinking beers on a Saturday afternoon in a friend’s living room. “Suddenly, this deer is banging its antlers against the window,” Sean says. “We’re all freaking out, like, ‘Oh my God!’ I run over to the side and I see Brett with this big smile. And he’s like, ‘Yeah, you just got deer-burned.’ That became his new thing.”

In the day or two following Brett’s death, Sean and Mollie wondered aloud, hopefully, if the whole ordeal was just another deer burn — the ultimate fake-out. But they knew that was wishful thinking. Once friends and family began arriving from out of town, Carol gave Sean and a few other friends one of several typed-in-advance notes Brett had left in his car near the bridge. There was also a handwritten note for the police.

“Suffering from empty nose syndrome (aka: sinus surgery gone wrong) and cannot suffocate any longer,” he’d scribbled with a Sharpie. “Please recognize this for what it really is and not just pass it off as ‘depression.’ … ENT doctors need to stop taking away perfectly good lives like mine was. This disease is very real, is untreatable, yet 100% preventable. Awareness is needed to make ENS a household name so people will stop being talked/pushed into very dangerous ‘routine’ surgery. We will continue to lose good, happy, productive, and healthy people to this disease otherwise. It took everything from me. I am not the last. http://www.emptynosesyndrome.org.

“P.S. Mom, I’m sorry! I held on as long as I could for you.”

The other notes went into more detail. One was a nearly 30-page script that Brett instructed Sean and three other friends to read at a memorial held at Natalie’s. The script had stage directions and specific instructions from Brett about who should read each section and even how long to pause so that certain jokes would land. It’s long-winded and rambling — angry at times (“I was ultimately killed by Empty Nose Syndrome and a salesman in a long, white jacket”) and darkly funny at others (“I felt like I was splashing around in the ocean and when Hasselhoff finally pulled up to rescue me, he just slapped some sunscreen on me and drove away on his little Jet-ski”). Brett had a way with words, but it was emotionally torturous for Sean and others to read those words on a stage in front of everyone.

“The idea of selfishly trying to end my suffering seems less and less selfish the worse things get,” Brett wrote. “I beg for your blessing in letting me go… I’m worn out, worn down and nothing feels right anymore. Our bodies are simply not equipped to deal with what I have been dealing with for so long, and I’m really sorry but I gotta get the fuck outta here, you guys.”

The poster from Helling Yeah!, a benefit that Brett’s friends threw to remember him. Courtesy Helling Family

The memorial was so packed that Sean and others had to keep moving tables out of the way to make space for the crowd. He was thankful for the task. It gave him something to do other than sit and stare at that deer head and wonder whether his friend could have been saved.

Brett may get one of his dying wishes in 2016. Though ENS is still little-known to the general public, more ENT doctors are recognizing it and wrestling with it. In August, one of Nayak’s patients, Peter Esquinasi, wrote a letter to the American Rhinologic Society, relaying his ENS experiences and demanding a response. “Just because many people survive these types of surgeries does not mean it is the best thing for them,” he wrote. “Yours is an organization which sadly must answer this question: Do ENTs do extra surgeries for extra money? Or are they grossly misinformed? Either one is bad, but you must look in the mirror and choose one.”

The ARS executive committee responded in a letter. “We want you to know that the American Rhinologic Society is pursuing an ongoing educational effort relating to ENS,” it stated. “Your letter is of particular importance to us in the context of our educational mission.”

Dr. David Poetker, who’s on the ARS board of directors, said in an email that the ARS has no particular stance on ENS. “It is a complex issue that is not very well understood,” Poetker says. “Unfortunately, there is not a lot of money for research for nasal issues in general. We continue to do the best research we can with the limited resources available.”

In January, Dr. Das in Columbus noted a sea change in an open letter to ENS patients he posted on the emptynosesyndrome.org forum. ENS, he said, is the thing keeping some of his colleagues up at night. “There continues to be greater recognition that ENS is a problem,” Das writes. “Many panels within the American Rhinologic Society are discussing ENS as a real problem and leading discussions on the best way to solve this problem.” Das’s letter also expresses hope about the injection therapies he’s tried on 180 patients from 25 countries; 82% of them reported an improvement in their symptoms.

And it’s no small thing that a press release for Ohio State’s nasal surgery study mentions empty nose syndrome by name, even though Carol Helling says Ohio State doctors told Brett he didn’t have it.

In some ways, Brett’s case was typical. His symptoms overlapped with many others who say they have ENS. The problem is, there’s still no firm definition of empty nose syndrome, which means there’s also no firm way of diagnosing it. And misdiagnosis is an issue. Houser and Nayak say they’ve seen patients who were convinced they had ENS but had a different nasal problem entirely.

“My research group is trying to lay the groundwork for better defining ENS, and pulling it out of the ‘mysterious, not sure it exists’ bucket, into the ‘definite diagnosis with defined parameters’ category,” Nayak says. Recently, Nayak and his Stanford researchers analyzed CT scans of patients diagnosed with ENS and compared them to patients who underwent turbinate reduction surgery but had no ENS symptoms — a comparison that had never been done before. “We detected a statistically significant central location in the nasal airway that swells in the CT scans of ENS patients, but not in any control patients,” Nayak says of the soon-to-be-published study. Nayak’s group also came up with six questions he says will more accurately diagnose ENS. He and his team will present their findings at a national meeting of otolaryngologists in Chicago in May.

Doctors’ responses to the presentations could determine how ENT doctors approach ENS moving forward. Will Nayak’s research — along with the work from Ohio State, Das, Houser, and others — finally put the skepticism to rest, or will doubt persist? If the data resonate, will doctors alter their surgical methods? And will those changes spill over to the cosmetic surgery community, where doctors performing nose jobs are probably even less familiar with ENS?

Turbinate reductions aren’t likely to go away, despite outcries of malpractice from ENS patients. Every otolaryngologist I spoke to, including those who acknowledge the dangers of ENS, continues to perform surgeries on turbinates. A friend of Brett’s recently wrote to his congressman to propose a bill that would require doctors to warn patients about the risks of ENS before turbinate surgeries, but even Houser says that goes too far. “The rate of ENS development is so small, and if turbinates are treated properly, ENS should essentially never occur,” Houser says. “The focus should be on educating doctors of proper techniques.”

Houser also often requires patients to undergo mental health assessments before he considers surgery, and Payne says he’s similarly vigilant. “There are some people I’ve refused to do surgery because they were people who I felt were setups for an empty nose scenario,” Payne says.

In January, Brett Helling’s friends celebrated his life with a two-day concert dubbed “Helling Yeah!” at Natalie’s. (The promotional poster featured a giant deer head.) At first, the organizers wanted proceeds from the event to benefit ENS awareness, as well as suicide prevention. But there’s no vetted, surefire way to contribute to ENS awareness yet. Despite the strides in research, it’s still nebulous, still opaque.

“Please help! I had surgery December 7, 2015,” she wrote. “I feel the nasal passages as huge tunnels, the cold air burns the nose and throat. … I’m going crazy, no sleep 8 days. What do I do? I don’t want to die.” •

I had stem cell injections on Wednesday, March 16th with Dr. Das. I decided to pursue this because, although I thought the small right septal implant offered some benefit, which Dr. Houser had implanted in 2006-2010, I felt it primarily offered form (such as increased nasal airflow resistance, increased moisture and heat retention), but NOT function. My right nostril still felt quite dead. No nerve sensation. Fatigue/brain fog, etc. It has been drier than normal, although not debilitatingly dry. And I was impressed by the Chinese study of 30 patients in which clear benefit was demonstrated upon biopsy of these patients.

To those who don’t know my specific nasal anatomy, I have 10% of the right IT remaining, 30% of the left IT remaining, and both of my middle turbinates are fully removed.

Now I should make this disclaimer: what I will share about my experiences should not be used as a guide to determine whether to pursue stem cell injections or not. I would encourage you to do so, but that’s an individual choice and I wouldn’t want someone to pursue it because “Chris Martin said it would benefit me” and then not have the same outcome. Rather, I would encourage you to look at our collective “trial” experiences, as each of the 4 or 5 people in the trial might have a different experience or different insights into how it helped or didn’t help.

Furthermore, I would point out that I am trying to do everything possible to facilitate the maximum benefit from having humidified air through my nose for 8 hours per day with a humidified CPAP, to using a highly moisturizing saline rinse (Breathe Ease) with the Hydro Pulse, in addition to eating very healthy and drinking a ton of water and even coconut water. I even have my herbalist sending me some herbs to promote nerve regeneration (Lion’s Mane).

So far, I feel very encouraged by the early results from the stem cell injections. I seem to have already improved functioning to my mucosa, primarily with respect to nerve regeneration. Specifically, I have noticed an improved sense of smell (easy to tell by closing my left nostril and sniffing through my right/dead nostril), improved sensation of air, and thinner, more moist mucus. Because of the improved sensation, I seem to have more energy and think quicker, even when I have had two lousy nights of sleep in a row! I felt more functional. I don’t get the dizzy feeling I used to have when I breathe in through my nose hard and I don’t feel run down. That’s been the huge difference for me so far, and I know it is not just a placebo effect, even though I am a positive person. Further, I didn’t have a headache upon awakening from a nap this Sunday, which I would typically have when not using a CPAP.

As for if there is more moisture in there, I am not sure. Moisture isn’t my biggest problem anyhow. The mucus does seem thinner on the right side, which might be because of the increased nerve functioning. Nor am I sure if breathing feels much different; sometimes it feels more moist while other times it does not while other times the small right septal implant feels annoying, as if there is too little air going through my right side. Not that I want to act on that right now, as I need to keep observing.

In any case, I am cautiously optimistic that this could be a life-changing procedure for me and just hope the nerve regeneration is permanent.

I won’t be able to correspond much on this at all, as my next few days are extremely busy and I don’t have access to Facebook for 70% of the day, but I will provide an update at a later time. I also grant anyone to share this post at the emptynosesyndrome.org forum or anywhere else you would like.

I felt very comfortable and confident with Dr. Das. His passion and expertise for ENS is very heartening to me. I was impressed by how personable and down-to-earth was this esteemed doctor. His willingness to try PRP/Acell on 180 patients, now stem cells, and probably implement future developments for ENS, whatever they might be, should be an encouragement to us all and give us hope.